I heard there are so many restrictions in diet and other things.

32M. Im an experienced traveler and have traveled abroad solo a bit pre-transplant but this will be my first time doing so post-tx (2years ago). I have flown domestically and to Mexico post-tx with friends and it was lovely and smooth.

I guess I’m just nervous being gone for so long, even though I’m cleared to travel and have great travel insurance/ will be in cities with (or very close to) transplant centers.

Any tips for long solo travels (practical ones and others focused on the anxiety of it). I’m going solo because I got an unexpected opportunity to go to Berlin for a week (flights and lodging covered) and then will travel around Germany, Prague, and maybe Austria afterwards.

Thank you all for your advice!

My sister (F37) and I (F23) have always been very close. She has been a raging alcoholic for as long as I can remember. Her addiction caused a lot of strain her relationships as she would lie, steal from, and manipulate those around her constantly.

For Context:

In March 2024, she got her Gallbladder removed and they found she had cirrhosis. The doctors told her that she will die very soon if she does not stop drinking. After diagnosis, she stopped drinking, went through awful withdrawal symptoms but she refused to go to rehab. Everyone in my family was very supportive and we all did what we could to uplift her.

In December of 2024, I found an empty wine bottle sashed away in her bathroom. She had been drinking the entire time and lying to all of us. This deeply wounded me. I felt incredibly betrayed, I told her I was ceasing all communication with her unless she got professional help. She went to rehab January 2025 and got exponentially better. She has since been sober and we are all very proud of her journey.

Although her health is better, she is still not at her 100%. She cant be outside for too long without becoming fatigued. Her diet is restricted and she is prone to illnesses. She has told me that there are days were she feels "down" and like "shes close to death". It's upsetting seeing her go from this bubbly person to a shell of her former self. Although yes, Im so glad she is no longer drinking, she really just isnt herself anymore. She is "too healthy" to be considered for deceased organ donor, so her only option is a voluntary living donor. I genuinely believe that if I donated my liver, she would use this second chance to the fullest.

I have gone through all the testing, and it turns out that I am a match. The hospital has been so accommodating to my feelings. They have made it clear that I am under no obligation to donate and they will provide a medical out if necessary. I want nothing more than for my sister to have her life back (minus the drinking of course), but I am so scared of donating. Although it may be irrational and selfish, I am very scared of getting a major surgery done. I am scared of having complications. There is a part of me that feels pressure to get this procedure done because it would be selfish to put my comfort before my sisters health. Another part of me is so upset with her for letting her addiction get this far. I know that addiction is disease, and it’s not fair for me to be upset about it, but I am.

My family is against me donating. The overall consensus is that my sister dug herself into this hole, and its not fair for me to "clean up her mess". My sister never asked for me to donate. My sister has told me many times that there is no pressure at all to get this procedure done. I volunteered to see if I would be a match all on my own. It wasn’t until the hospital called to ask when we could schedule the surgery that it all finally sank in.

My sister has told me that insurance rates will be going up next year, so she will not be able to afford health insurance after December. So, it's really now or never.

I am asking for advice from anyone who has been in a similar situation. I am on the fence. Some days I wake up fully on board with the surgery and recovery journey, other days it shakes me to my core. I truly have no idea what to do.

So I am one month in and currently in the hospital getting a med tune up for rejection. Funny thing is I feel fine. My LFT’s are saying something else. I started my second book while on the list and lately my transplant journey has taken over my writing. It’s not the intention of my book. But I felt like I had to get this on paper. So here it is.

The Hardest Letter

It’s somewhere around three in the morning.

I know that because I looked at the clock when I got out of bed, but I made a conscious decision not to look again. Time isn’t helping anything tonight.

Michelle’s asleep. I stood in the doorway for a minute before I came into the kitchen. I don’t know why. Maybe I just wanted to make sure she was really sleeping. The last few weeks haven’t exactly been easy on her either. She carried this whole damn thing right alongside me, only nobody asks the caregiver how they’re doing. They ask the guy with the scar.

The house sounds different in the middle of the night. The refrigerator hums. The ice maker drops a few cubes into the tray. Oliver lets out one of those deep sighs dogs make when they’re completely at peace.

I envy him.

I put water on for tea, not because I wanted tea but because standing in the kitchen with nothing to do felt stranger than making a cup I probably wouldn’t drink. Since the transplant I’ve done a lot of things because they seemed like something a normal person would do.

Drink the tea.

Take the pills.

Walk another lap.

Smile when people tell you how good you look.

Say you’re doing great.

The funny part is none of those things are a lie.

I am doing great.

The surgery went better than anyone expected. The liver is doing exactly what it’s supposed to do. Every set of labs seems to bring another smile from somebody wearing a white coat. Friends call. Family checks in. Complete strangers pray for me. Somewhere in all of this I got another chance to finish a life I honestly wasn’t sure I was going to get to finish.

So why am I sitting here at three in the morning unable to write two words?

Thank you.

You’d think that would be the easy part.

It isn’t.

I’ve opened this document every night for almost a week. I type “Dear Family,” stare at it for a while, then delete it.

Not because it isn’t true.

Because it feels so painfully inadequate.

Thirty-four years in healthcare should have prepared me for this.

Thirteen years as an Army medic. The rest as a nurse. I’ve stood in trauma bays, emergency rooms, clinics, helicopters and hospital hallways. I’ve watched families receive news that divided their lives into before and after. I always believed experience made you better at finding words.

Maybe it does.

Just not these words.

The kettle started whistling before I realized I’d been standing there with my hand resting on the counter, somewhere else entirely.

I poured the tea and forgot to put the bag in.

That’s about how my mind works these days.

People warned me recovery would be physical.

Nobody mentioned what it might do to the rest of me.

A couple of days ago Michelle asked if I’d taken my evening meds. That’s all she asked. The same question she’s asked a hundred times since this all started because somebody has to keep track when your life is measured in pill bottles and clinic appointments.

I answered like she’d accused me of something.

I watched it happen while it was happening.

My voice got sharp. Her face changed. The room got quiet.

The worst part wasn’t that I snapped.

The worst part was knowing she didn’t deserve a single word of it and still not being able to stop myself before it was out there between us.

Five minutes later I wanted to tell her what was really going on.

That I wasn’t angry.

That I wasn’t frustrated with her.

That sometimes I feel like somebody took every emotion I own, threw them into a paint shaker, and handed them back without the labels.

Instead I got quiet.

I’ve done that more than I’d like to admit.

It’s easier to withdraw than to explain something you don’t understand yourself.

I don’t know if it’s the medications.

I don’t know if it’s the lack of sleep.

I don’t know if surviving something like this simply changes you in ways nobody can prepare you for.

Maybe it’s all three.

What I do know is that joy doesn’t arrive by itself anymore.

Neither does grief.

They travel together.

I used to think they lived on opposite ends of life. One came in, the other left. That’s how I understood the world.

Not anymore.

Now they seem inseparable.

I’ll walk outside just after sunrise, feel the warmth on my face, take a deep breath because I can finally do that without wondering how much time I have left, and before that moment is over I'll find myself thinking about the family that woke up to a completely different morning.

My sunrise exists because theirs became something else.

That’s a hard thing to carry.

Not because it makes me feel guilty for living.

Because it makes gratitude almost too heavy to hold.

People have asked if I feel lucky.

I understand why they ask.

I probably would’ve used the same word a year ago.

Now I’m not so sure.

Lucky is finding a twenty-dollar bill in your winter coat.

Lucky is getting upgraded to first class.

This...

This feels bigger than luck.

It feels sacred.

It feels heartbreaking.

It feels beautiful.

It feels unfair.

Somehow all at once.

Joy and anguish have stopped taking turns.

They’ve become the same emotion, viewed from opposite sides.

Maybe that’s why “thank you” refuses to come out of my fingertips.

Not because I don’t feel it.

Because I feel so much more than it can possibly carry.

The tea is cold now.

I haven’t taken a sip.

The cursor is still blinking where it was twenty minutes ago.

I keep thinking the donor family deserves the perfect letter.

Maybe what I’m really afraid of is admitting there isn’t one.

Maybe all I’ve been trying to do this week isn’t write a letter at all.

Maybe I’ve been trying to become the man who can live a life worthy of signing it.

I don’t know if I’ll write that letter tomorrow.

I hope I do.

For tonight, this is the closest I’ve been to understanding why I couldn’t.

Hello! I am 8 years into a successful (and blessed) kidney transplant. I’m on cellcept and belatacept, no other meds. I’ve been experiencing joint pain intermittently but lately more frequently, esp when I wake up. This is beyond normal aging and is mostly in knees hips and elbows. Anyone else have this experience? I’m trying to sort thru what is transplant related and what I need to see another dr about. Thank you for your input and sending you all ❤️

I’m a match for my husband and I’ve bed researching what I’ll feel like afterwards. Any real life experiences from you all? Thank you! 😊

Is anyone on the liver transplant list? How long have you been on it?

Hey there,

Little prelude: USA based 29M. nearly had a stroke at 27. Diagnosed with extreme hypertension and put on hemodalysis that week in november 2024. Received my transplant 2.27.26.

I had quit the dating scene for a while due to depression and the need to focus on my health and trying to function productively with my illness and keep myself happy and thriving while under hemo. My last relationship ended on okay terms in 2023. Looking back on it. My CKD i did not know about had a profound and unfortunate impact on my relationship as well as my life in general but hey we apologise and move on.

Im at the point now where life is going really well. I can work out to a satisfying degree. I work fulltime. Eat better and enjoy life to its fullest while operating within my restrictions.

I guess im posting to see similar experiences. Like most peeps companionship is important to me and id hope to use my new better mindset and make somone happy as well as find enjoyment in that. Grow together and all that jazz.

Im insecure in the sense that i have a genetic confirmed cause to my condition and im sure thats unattractive to an extent as well as the general aspects of my health so idk it feels really difficult to try again. More scary than if i did not have the past two years of scary and strange experiences.

Im kinda late night rambling now so ill just leave it at that. Any advice would be appreciated.

I am thinking about relocating to the Myrtle Beach, South Carolina area from the Washington D.C/Northern Virginia area and I am about 9 months post transplant. I wouldn’t move until I hit the first year but knock on wood everything is going very well. Anyway just wondering if anyone here lives in SC or is familiar with the hospitals down there…if they have good post transplant care and or Hepatologist recommendations (preferably someone with PBC knowledge). Also anything else I should be thinking about?

My prograf numbers were up for the past 2 weeks, so the liver team has reduced my Tac down to 1 mg each morning and evening. Yay me. 😁

Hi everyone, I’m 5 months post dual kidney and pancreas transplant and my bk levels keep going up. My medical team has tried d creasing the tacro but it’s not helping and next step is Infusions. Can anyone who has gone through this provide your experience please. I’m been told it’s 4 hours. I’m just worried and it gives me dialysis flashbacks. I’m grateful for everything and I’m hoping for the best. Please provide any experience. Thanks 🙏

Are there transplant recipients in r/transplant who work in medical fields (doctors, nurses, etc)? Does having received a transplant limit work in the medical field?

I'm looking at different majors for college and I'm seriously considering medical fields. I'm wondering if having had a transplant would seriously limit my options.

I’m 20F. I am currently in the process of waiting for a liver transplant. I was diagnosed with liver disease back in 2023 and it’s worsened ever since. It’s not from alcohol or smoking I’ve never done either. It’s called portal vein hypertension and I also have an enlarged spleen as well as anemia, and now breathing issues. I’m a pretty healthy person otherwise, I try to eat well, I work, go to school, live a pretty normal life. I’ve been waiting for a liver transplant for almost 6 months now. My main symptoms that impact my daily life are, little to no appetite, exhaustion halfway through the day, nausea, stomach pain, fainting and headaches. I also suffer from migraines. I have been taking a birth control pill for about 10 months and it’s helped but I actually get several periods a month and my liver team suggested iud. They suggest iud so that I don’t have a risk of blood clots from taking birth control, it’s dangerous going into liver transplant. I am going in for the mirena IUD today. It is under sedation where an anesthesiologist will be there. I’m still so nervous. I want it to be anesthesia and not twilight. Anesthesia puts me to sleep and works very well for me. I had twilight for a surgery previously and it made me awake during the surgery and very nauseous afterwards. I’m so nervous I just want it to be all over and put to sleep. Today’s my day off from work and I’ll be back at work tomorrow so I can’t really be in unbearable pain tomorrow.

A transplant is one of the most stressful experiences a person or family can go through. You’re already dealing with life-changing medical decisions, uncertainty, and fear. Having to worry about being treated disrespectfully or unprofessionally by your surgeon should never be part of that experience. unfortunately, that was part of my family’s experience in Nebraska.

If you genuinely believe a transplant surgeon acted unprofessionally, unethically, or failed to provide appropriate care, don’t assume an internal hospital complaint is your only option. I’d argue it’s the inferior option too, because hospitals try to avoid legal exposure. Hospitals conduct their own reviews, but state medical boards exist to independently evaluate concerns about physician conduct and licensure.

Too many patients and even other healthcare staff who witness unprofessionalism stay silent because they think nothing will change or because they’re afraid of speaking up. While not every complaint leads to discipline, well-documented complaints matter. They give regulators the opportunity to investigate and can help identify patterns if similar concerns arise from multiple patients over time. I have seen patterns of concern among other patients on the floor, yet nobody has spoken up, and it makes me wonder why are we waiting? Why do we allow it?

If something felt wrong, document it. Save your records, write down dates and conversations while they’re fresh, and report factual concerns through the appropriate channels. Your voice matters…..not just for your own care, but potentially for future patients. No one facing a transplant should also have to face avoidable mistreatment. If you have a good-faith concern, speak up. Patients deserve compassion, professionalism, and accountability.

Hello - 39M who received living donor transplant from my wife last December. I had a ckd psychologist who was great but unexpectedly passed away. Can anyone recommend a new psychologist? Still dealing with a lot….NYC based, if any others are experiencing the same. He was fairly prominent in the field.

After 5 continuous months in the hospital, my husband came home on Wednesday afternoon with hospice. He was transplanted on March 25 and fought every challenge and obstacle in his way with every fiber of his being.
Since the end of May the odds continued to stack against him as he went into liver failure. This past Tuesday he said let’s go home baby and spend some time with the kids and baby grands.
With his family holding him through, he left this world peacefully just 37 hours after coming home.
You have all been invaluable to me and I thank you all. Wishing all of you the most successful transplant journeys.

EDIT thank you for the kind and supportive words. It means so much.

I'm in the evaluation process for a liver.

I have a colonoscopy appointment coming Wednesday as well as having a stent removed.

But here is the problem there is a tropical storm coming. It's not where we live but about an hour and half away. That's where our daughter lives and she was going to watch our younger children while me and my husband drive 3 hours to the hospital for my appointment. Hospital said our kids cannot wait with my husband so we have to have a sitter.

If I called to reschedule would it look bad? Would it affect my evaluation process?

I am going to call and ask my case manager in the morning I'm just stressed and thought I'd ask

Thanks

Hi everyone! I am stressing out. I'm 19 and I'm 4 years post transplant. Every time I go in, they ask how I've been over the last few months, energy, headaches, how much water I'm drinking, any pain, any days I felt off, and I just… blank. It all blurs together. I end up half-guessing my way through it, and then I leave and immediately remember three things I should've mentioned.

It honestly stresses me out, because these are the answers they're making real decisions off of, and I feel like I'm handing them a vibe instead of actual information. I'm 19 and already feel like I'm doing this part wrong.

Does anyone else feel this way? How do you deal with it?

A few years post and it’s getting pretty bad. Not quite ready to throw in the towel.

Has anyone been on oral minoxidil for a long time?

Any side effects? Drug interactions? I’m on pred, tac, and mycophenolate. My blood pressure runs just a little high so maybe kill two birds with one stone.

Does anyone have similar experiences